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WHAT ABOUT SUDEP

WHAT ABOUT SUDEP

SUDEP-MATTERSAbout Epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy)
When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects 3 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Because available treatments do not completely control their seizures, 3 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control. SUDEP is the leading epilepsy-related cause of death; each year in the U.S., SUDEP kills more than 2,750 people with epilepsy.

SUDEP occurs when a person with epilepsy in their usual state of health dies unexpectedly; it is the most common cause of death from epilepsy. An estimated 1 in 1,000 adults in the U.S. with epilepsy dies from SUDEP each year; however, if seizures are uncontrolled the risk increases to 1 in 150.

sudep-awareness-day-2015-og-tw-card

Four Critical Actions May Save Lives
Nearly 30 percent of people living with epilepsy today have seizures that resist all current treatment options. The Epilepsy Foundation supports a wide-range of research studies and the development of new therapies to help change lives.

The Foundation also believes education is key for people living with epilepsy who can achieve greater seizure control. People with treatable epilepsy and their health care teams mistakenly believe that seizures are controlled if the person has them rarely or in a predictable manner. However, they are still at risk for SUDEP; true seizure control means having no seizures at all. Learning self-management of epilepsy is crucial to help reduce the risk of seizures. Proper self-management is achieved through dedicated partnership between the person with epilepsy, their caregiver, and their health-care team. Managing seizures involves many steps – preventing triggers or situations that a person can easily modify are key steps along the way. The #AimForZero campaign urges people with epilepsy to adopt four key self-management actions to help avoid SUDEP.

  1. Taking epilepsy medications as prescribed is critical because these medicines are only effective when taken regularly.
  2. Getting enough sleep helps patients avoid sleep deprivation, which can trigger seizures.
  3. Limiting alcohol consumption is important because seizure medicines can lower the tolerance for alcohol and people with epilepsy are at a higher risk of seizures after drinking alcoholic beverages.
  4. Finally, striving to stop seizures motivates people with epilepsy and their caregivers to strive for zero seizures and talk to their healthcare providers about the risk of continued seizures and SUDEP.

Source: ForexTV.com

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3 Comments

  1. Epilipsy at the case of my 12 years old son was uncontolled and unpredictacble. At first, we were offered a slution of a surgery to take away the dadged part in the left side of brain.

    After visiting the best prof. In germany. He discovered my son seizures were because of limbic enciphalitis. Which is inflamation in part of the brain.

    We are under treatment of huge dosage of cortison about 3000 ml per month. My son is doing perfect , sizures began to be limited. And we are still following up.

    Reply
  2. …nobody with Epilepsy wants to know or hear about “SUDEP”… OR at least… I DON’T…!!! NOT sure how telling me I can possibly DIE from a Seizure helps me… ???
    It only creates unwanted stress & fears…

    Reply
    • Profile photo of EpilepsyU

      We understand but we can’t hide from it. The article also shared things to do such as taking medications as prescribed, getting enough sleep, limit alcohol and finding a good neurologist/epileptologist to control your seizures. We need to talk about it to solve it.

      Thanks for your comment.

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